Whoa!

As you know by now, every day is an adventure when getting chemo. I never know what new symptom will reveal itself each day. For the past few weeks, I’ve def felt the fatigue catching up with me. We live in SF and our house is on a slight (by SF standards, anyway) hill. In the past three weeks, I’ve noticed that the climb up the hill leaves me pretty winded. Since my first Taxol infusion last week, it’s only gotten worse. I officially feel “cancer-y” — and, I hate to admit it, but I look sort of cancer-y as well. Especially when I’m just hanging at home without make-up on.

In addition to really feeling the fatigue, the latest is that I’ve been running a low-grade fever every night since last Thursday. The weird thing is — I’m totally fine during the day, but at about 5pm every evening, I get the chills and the fever sets in. Tonight is no exception.

Paul has been getting a good laugh out of this because I add layer upon layer to my body to try and get warmer — I look like a complete bag lady! In the past few days, I’ve been known to wear two robes and have a third draped over me as a blanket (all of this is in addition to layers of real blankets and comforters). Oy!

We checked with Garrett and he says we don’t need to worry — we will be seeing him tomorrow for my second Taxol infusion and he’ll check my white blood cell counts then (though he doesn’t think they will be the culprit as much as your standard cold virus). In the meantime, the RX is “steady as she goes”.

Anyway, the whole point of this post is to divulge the most disgusting thing that’s happened to me yet. You know how when you get the chills your whole body sort of tightens up, shivers run through it and your muscles involuntarily flex? Well, that’s been happening to me every night for 5 nights. At first I didn’t really notice anything weird, but last night it dawned on me — underneath all my layers — every time I shiver, I feel my expanders tighten and rise up (like, noticeably rise up). So this morning, after I took a shower and was getting ready, I stood in front of my mirror and tried to flex my chest — to my utter dismay, my breasts literally flexed. I can flex each one independently of the other like a male body builder WTF?

As if I’m not already dealing with enough body-image issues, I now have to add this to the list?

I called Paul immediately. I was in a complete panic. He tried to laugh it off and joke about it with me — which I erupted at. Once he realized how distraught I was, he changed his tactic and tried to plant the seed in my head that I can flex right now because it’s just my expanders and not the real implants. This approach was a little more effective.

I’ll ask Julie and Dr. Hong about this the next time I see them and report back to you. For now, I’ll just take a lorazepam and try to get out of my head about it.

As I mentioned above, we are off to chemo again tomorrow. Maybe I can convince Paul to do a post while we’re there and I’m in la la land from the benadryl!

Final thought for this evening — a fellow BAYS warrior, Meaghan, is having her mastectomy tomorrow. Please send all your healing vibes and strength her way.

xo

Full Steam Ahead With a Port

I feel like I finally turned a corner this morning. I woke up and was in a little less pain and felt like my energy was on the uptick.  I walked Lucy to her vet’s office and got her nails trimmed. It was a good walk/errand for both of us!

Another huge accomplishment today — I got out of my pajamas for the first time since Saturday! Yup, that’s right, I put on normal clothes and jewelry for my noon appointment with Garrett (small milestones people, small milestones).

It’s official —  I am out of the woods wrt the Adria leak! yay! It might take another month or so for my arms to fully recover — but that’s just because my body is worn down from chemo, generally — so healing just takes longer than someone with a healthy immune system.

I can’t tell you how happy I was to hear the news. Everybody at Garrett’s office was really psyched too. It’s like one giant family over there — and everybody pulled together over the drama that was my leak!

End of day, we think my vein just gave out on me and that’s just something that can happen during chemo. A lot of bad things can happen during cancer and chemo — it’s just part of the bag-o-tricks.  You can blow a vein, a vein can get necrotic, you can get neuropathy, mouth sores, lymphodema and/or your finger nails can fall out of their nail beds. In my case, my vein gave out during my second to last AC infusion. Shit happens.  Also in my case, my gums are starting to ache and my finger nails are turning black — which leads me to believe that they may eventually fall out (gross). I spoke with Natalie, the nutritionist, about all of these new side effects and she made a few recommendations for me. Unfortunately, she said that these symptoms will likely only get worse once I start the “T” infusions. Good God.

I also had to have another nuelasta shot this afternoon. My white blood cell count was still really low. So, I have those body aches to look forward to starting tomorrow. Ugh.

I am going to go have a port put in later this week or early next week. We don’t want to chance any more vein issues for the last AC or any of the 12 “T” infusions I have left to go.  While I’m not excited to add yet another scar to my body, I know it’s the right thing to do.  At this point, we can’t put the blood pressure cuff on either one of my arms.

Garrett is trying to get me in with one of his buddies who is a whiz at placing ports here in the city in the next few days.  Hopefully my insurance won’t make a big stink about it since I’m technically with PAMF and should probably have the port done through them.

In any event, that’s where we’re at.  Even though I officially feel like a run-down, fatigued cancer patient.  And as crappy as some of my new side effects are, I am overwhelmed with relief that all will be fine with my arms and veins. All in all, today is a good day.  Whoot whoot!

Day 1 of Chemo — But I’m Buffalo Strong & Talkin’ Proud — Or at Least Trying to Anyway….

A few years ago, Paul and I watched this amaze documentary on the early 90’s Buffalo Bills. Back when Jim Kelly, Thurman Thomas, Andre Reed, Darryl Talley, Bruce Smith et al dominated the AFC. Back when telling someone you are a Buffalo Bills fan didn’t get you laughed at. Any way, my point is Marv Levy (the Bills’ head coach at that time) used to repeat an inspirational quote from a poem to the team when they were down and out. It’s a poem about war, but I think it applies to war, football AND chemo.

So, as I begin my chemo journey today, I shall remember the words of Sir Andrew Barton (spoken by Marv Levy in my head!):

“Fight on my men, we’re hurt but not slain. We’ll lay down and bleed a while. Then we’ll rise and fight again.”

Talkin' Proud!

Talkin’ Proud!

Good Karma

I feel like I’ve been neglecting my blog! So much has happened this week I can’t wait to catch everybody up!

As you may or may not have recalled, this was the week we were meeting with three different medical oncologists here in the city. The idea was to hear each one out, understand their thoughts on my chemotherapy regime (and rationale behind it) and also to just see who we liked best (everything from the doctor, to the nurses, receptionist, office atmosphere etc).

All three oncologists came highly recommended to us, so we knew we couldn’t go wrong — it was really just a matter of who we clicked with.  Our first appointment was Monday morning with Dr. Garrett Smith of Smith Integrative Oncology.  I learned of this practice through the gals at BAYS (Bay Area Young Survivors). Dr. Smith believes in tailoring each patients chemo to them, rather than just taking a formulaic approach.  FOr example, since I am triple negative, most doctors would just say, “hit her with the ACT regime” but Dr. Smith looks at me and my pathology to be sure he makes all the right decisions for what’s best for me.  He also believes in combining acupuncture and massage with chemo so he has people on premises that can offer those services on infusion day in addition to having a nutritionist on site.  OK, need I say more? I don’t think so.

Our meeting went amazingly and I am in love with Dr. Smith (OK, that is a strong word, but boy do I have a crush on him!). He listened to every one of my questions and answered them thoughtfully, directly and succinctly  He also took very seriously our future family planning desires — which as you know are extremely important to us.  Needless to say, we chose Dr. Smith on the spot and I cancelled the other two appointments we had scheduled — that’s how much I liked him and his practice!

Dr. Smith wants to do a few more tests on the pathology of my tumor to determine the exact chemo cocktail I will be on. All of that is underway right now. I likely will have to do the full blown ACT cocktail (I’ll explain what all of that means in more detail when it’s confirmed that’s what I’m getting) — which is the kick-you-in-your-ass cocktail.  But there is the slightest of possibilities that I may only need the CT cocktail (get to skip the “A” which is super duper toxic).  Again, I’ll go into much more detail about chemo and all of its lovely side effects in a different post!

My first infusion is tentatively scheduled for Tuesday, December 18th. Stay tuned for more details on all of that as they come in! Rather than freak myself out about what’s to come, I decided to take to the BAYS list-serve and start a thread seeking advice from chemo veterans. The responses were many and super informational. I plan to summarize all the advice I was given in another post — because I got a lot of great info!

In addition to making the huge decision about our medical oncologist (Which is such a relief! Honestly, I feel SO lucky that we are with Garrett), I also had my three week post op with Dr. Hong (my favorite plastic surgeon on the planet!).  Paul got really busy with work, so my brother Bobby took me to my appointment with Dr. Hong. It was really nice that we got to spend some one on one time together and talk about all the ins and outs of cancer, chemo etc. I forget sometimes that while I’ve quickly become an expert on all things breast cancer — my family hasn’t.  So we talked a lot and he asked a bunch of questions and we just sort of chatted about everything.  It was really nice!

I think Bob was a little bit weirded out that I wanted him in the room with for the plastics appointment though. I mean I’m his sister, he’s not supposed to see my boobs (or lack there of, in my particular case at the moment!). But he was a champ.  Dr. Hong removed all the surgical tape from my surgical incision sites and said everything was healing nicely. He even gave me the go ahead to start shaving my armpits and wearing deodorant SCORE! I KNOW I’m being a good patient if I got clearance for that 3 weeks out! yeah boyyeeee! 

The hardest part of the appointment was when Dr. Hong inserted a needle into my spacers (ie. boob prosthetics) and pumped them up with saline. This will happen for the next few weeks until we get my boobies to the size we want. I’ve mentioned this before, but the process is slow because you are literally stretching your muscle and skin.  The insertion of the needle hurt A LOT (I’m not going to lie to you), the adding of the saline — not so bad.  I had to hold Bobby’s hand through the whole thing — but he said I was trooper and did a good job!

A few hours later however, I felt a lot of pressure across my chest and my surgical arm (ie. my left arm and armpit close to where my tumor and the sentinel node biopsy were done) was really tight and hurting. Thankfully I went to PT that afternoon and really stretched myself out. As a matter of fact Julie Wong, my AMAZE PT, said that I officially have full movement back in both of my shoulders and that I can start putting shirts on every my head! Yay for another small victory!

Unfortunately, overnight, my body tends to tighten up all over again (just by virtue of lying flat and not moving at all), so I woke up in the middle of the night (well, 5am-ish) with excruciating pain. It felt like my chest was in a vice. This is not an uncommon description to hear from people who have just had their spacers filled — from what I’m told. Oh joy! I have how many more of these fillings to go?! Lordie!

But you know me, I cried it out a little bit, Paul helped soothe me, I took a pain pill and then I moved on. I mean somebody needs to take the dog out for a poop, feed her and do the laundry right?! So that’s what I did. I also made my first medical marijuana order — it was due time. I’ll keep you all posted on that journey. I’m not going to try any of the stuff I ordered (edibles as well as medicinal herbs and a vaporizer) until someone is here to monitor me and show me what the heck to do! I have zero clue what a vaporizer is — all I know is that I do not want to smoke pot and I hear during chemo you might be so nauseated — that you really don’t want the edibles. So I’m covering all bases. And like any good Type A gal — I will be test running over the next few days!

So, I’m going to end this post on an up note for you all. Earlier today, I was walking to the bodega at the bottom of the street to get some supplies and I ran into my UPS delivery guy, Devin. He stopped me and said I have a package for you from yesterday, you weren’t home. I replied, yes, I know, I saw your note stuck to my door last night — I had some doc appointments yesterday — sorry I missed you. He went on to say what an inspiration I am to him and then ran to his truck to get me my package.  But, not only did he give me the pair of Rachel Zoe jeans I ordered from Bloomies (yay for Black Friday online sales!) — he also gave my a bouquet of flowers from HIM to ME! How sweet is that? He’s obviously seen a lot of me over the past few weeks since I’ve been home and so many of you have been so kind to send us flowers and pick-me-up gifts. But to have my UPS man get me flowers just because was so AMAZING. That is good karma — finally coming my way. I will make sure to pay it forward. I promise.

xoxo

Addendum to the Last Post

Paul got home last night and I told him that our surgery date got moved up by a week. Not gonna lie, I started to tear up a little bit.  He said, “So, let’s go to Hawaii this week instead.” So calm and even keeled (he is such a good balance to my fiery, uncalm ways!).  So, he re-arranged a few things at work and booked the trip. I am so excited to say that we’ll be feeling the Aloha spirit this Monday through Friday. Then it will be back to reality.

Since we are losing so many of our “prep” days, I’ve decided to ask for help. So many of you have offered, and we won’t be able to do this alone. So my brother, Bob  and sister-in-law, Sarah are going to run around town this week to help secure a few last-minute items.  I’ve started learning about the tips and tricks to recovery from a bi-lateral mastectomy.

I was fortunate enough to be put in touch with Michelle McBride, President and Chairperson of the Noreen Fraser Foundation.  Katie Sann, Stella  & Dot’s PR genius, and my friend, told Noreen and the folks at the NFF (Noreen Fraser Foundation) about my blog and my recent diagnosis.  I’ll post more about the amazing work the NFF is doing in a later post.

Michelle reached out as a resource for me as she also had a bi-lateral mastectomy with reconstruction.  She and I had a phone date yesterday afternoon and she told me all sort of tips, for example, I’m to buy 4 baby ice packs from target (princess, hello kitty, dinosaur — pick your favorite theme) because normal ice packs will be too heavy and these small ones slide right in your bra. She also said to buy a $10 electric razor from Walgreen because shaving the pits will become difficult post-surgery.  Zip-front sports bras saved her life — but they are very hard to find. So, if you need a few, check out JC Penny online (and remember to buy a size larger to take swelling into account). We also need to buy a ton of pillows to help prop me and my arms up comfortably in bed.

Anyone getting dizzy just thinking about this? I know I am. Well, like Scarlett O’Hara said, “I can’t think about that right now. If I do, I’ll go crazy. I’ll think about that tomorrow.” Diddle-dee. So for now, I will concentrate on getting as much done as I can in the next two days, then off the Garden Isle we go!

Reality Bites, But Life Goes On

I was walking down the aisles of Bed Bath and Beyond this afternoon. The point of my trip there was to buy new shower curtain liners (What? I’m assuming we’ll have a lot of visitors over the next few months and I don’t want them showering next to gross, mildew-y curtains. Plus, I won’t be able to lift either of my arms after surgery, so I need to switch out the liners ASAP!), but I ended up buying a ton of other crap — like soap, Keurig pellets and shaving cream.  I’ve been out of shaving cream for a few weeks now. Everyday, when I’m in the shower, I make a mental note to buy more shaving cream. My poor legs have been getting abused by my Dial bar soap (which Paul says smells like the hospital (ironically)) and my lady razor (very much like the Lady Bic Pens we’ve all been hearing about lately!) lol.

So, I found myself in the toiletries aisle.  I put a regular size can of shaving cream into my basket — only to realize how wasteful that was.  So I put it back on the shelf and walked over to the travel size area — and grabbed a small can instead.  The reality of my impending chemo hit me head on — in the middle of BB&Beyond — I won’t have any hair on my body in about 6 weeks — so there is no need to buy a giant can of shaving cream. Oy.

But, as the title of my post indicates, life goes on. So, I got home, took a shower, shaved my legs and am getting ready for dinner out with my pal Shadin. A girl’s gotta eat, right?